S Koch1, V Vimarlund. 1. Health Informatics Centre, LIME, Karolinska Institutet, SE 171 77 Stockholm, Sweden. E-mail: sabine.koch@ki.se.
Abstract
OBJECTIVES: To provide a survey over significant developments in the area of linking personal health informatics and clinical informatics, to give insights into critical advances and to discuss open problems and opportunities in this area. METHODS: A scoping review over the literature published in scientific journals and relevant conference proceedings in the intersection between personal health informatics and clinical informatics over the years 2010 and 2011 was performed. RESULTS: The publications analyzed are related to two main topics, namely "Sharing information and collaborating through personal health records, portals and social networks" and "Integration of personal health systems with clinical information systems". For the first topic, results are presented according to five different themes: "Patient expectations and attitudes", "Real use experiences", "Changes for care providers", "Barriers to adoption" and "Proposed technical infrastructures". For the second topic, two different themes were found, namely "Technical architectures and interoperability" and "Security, safety and privacy issues". DISCUSSION: Results show a number of gaps between the information needs of patients and the information care provider organizations provide to them as well as the lack of a trusted technical, ethical and regulatory framework regarding information sharing. CONCLUSIONS: Despite recent developments in the areas of personal health informatics and clinical informatics both fields have diverging needs. To support both clinical work processes and empower patients to effectively handle self-care, a number of issues remain unsolved. Open issues include privacy and confidentiality, including trusted sharing of health information and building collaborative environments between patients, their families and care providers. There are further challenges to meet around health and technology literacy as well as to overcome structural and organizational barriers. Frameworks for evaluating personal health informatics applications and pervasive health technology are needed to build up an evidence basis.
OBJECTIVES: To provide a survey over significant developments in the area of linking personal health informatics and clinical informatics, to give insights into critical advances and to discuss open problems and opportunities in this area. METHODS: A scoping review over the literature published in scientific journals and relevant conference proceedings in the intersection between personal health informatics and clinical informatics over the years 2010 and 2011 was performed. RESULTS: The publications analyzed are related to two main topics, namely "Sharing information and collaborating through personal health records, portals and social networks" and "Integration of personal health systems with clinical information systems". For the first topic, results are presented according to five different themes: "Patient expectations and attitudes", "Real use experiences", "Changes for care providers", "Barriers to adoption" and "Proposed technical infrastructures". For the second topic, two different themes were found, namely "Technical architectures and interoperability" and "Security, safety and privacy issues". DISCUSSION: Results show a number of gaps between the information needs of patients and the information care provider organizations provide to them as well as the lack of a trusted technical, ethical and regulatory framework regarding information sharing. CONCLUSIONS: Despite recent developments in the areas of personal health informatics and clinical informatics both fields have diverging needs. To support both clinical work processes and empower patients to effectively handle self-care, a number of issues remain unsolved. Open issues include privacy and confidentiality, including trusted sharing of health information and building collaborative environments between patients, their families and care providers. There are further challenges to meet around health and technology literacy as well as to overcome structural and organizational barriers. Frameworks for evaluating personal health informatics applications and pervasive health technology are needed to build up an evidence basis.